Recovery, remission, and verb tenses

I was about to post a comment on Laura Collins' recent blog "Another word bites the dust" when I realized that the comment was long enough to be its own post. So here goes.

Laura's post was about the use of recovery/remission when talking about eating disorders. I know that in my (lengthy) treatment experience, I am much more familiar with the word "recovery," and have more or less adopted that into my lexicon. The problem is that there is no solid definition of recovery from an ED- most research studies measure "recovery" as no longer meeting the diagnostic criteria for anorexia or bulimia. Which, as anyone with an ED can tell you, is ludicrous almost to the point of hilarious. Because we all know anorexia is "over" once you hit 86% of ideal body weight, and you no longer have any problem with bulimia as long as you binge and purge less than twice a week. Riiiiiiight.

The idea of eating disorder recovery is from the addiction field, and there certainly are no shortage of parallels between eating disorders and addictions. Is an eating disorder the same as an addiction? I'm not prepared to make that statement, but nonetheless there are many similarities. Laura writes on the "recovery model":

This use of the word means re-framing the goals for the treatment process. The recovery model asks the patient what they want, what the illness means to them, and sets goals based on those goals and values. Since this idea comes out of the addictions and schizophrenia world I understand the shift away from pathologizing and insisting on "cure" in that context but absolutely reject it with eating disorders.
Not surprisingly, I agree with Laura. To some extent, the recovery model has a point: there is no cure for eating disorders. For that matter, we can't cure the common cold or the flu, either, let alone cancer, AIDS, and even athlete's foot. But we can treat these illnesses, even without a "cure". The difference is that with most illnesses, the sufferer wants treatment and seeks it out; with eating disorders, that's not always the case. Cancer is no longer a death sentence or necessarily a lifelong condition. We treat it and then we watch and wait and monitor. A person can life a fulfilling life that is totally and utterly cancer-free, and yet they still need regular monitoring.

Eating disorders are similar. I'm not saying that "monitoring" needs to be regular therapy or doctor's visits or monitored meals. But ongoing recovery can't be neglected. Jenni Schaefer says she is "recover-ED" and I have no reason to doubt her. Yet as much as she has put her eating disorder behind her, she also doesn't tempt fate by dieting, being unmindful of her eating, or otherwise not taking care of herself.

In a nutshell, my views on recovery/remission from an eating disorder is this: the goal is to put your eating disorder in the past tense, but always keep your recovery in the present tense.

One day, I want to say "I had an eating disorder," or "I used to be so obsessed with food." It happened, my illness was treated, and now my life is continuing, unencumbered by anorexia. But my recovery must stay in the present tense. I can't get lazy about not waking up early enough to eat a proper breakfast. I can't neglect my sleep. I can't think about losing a few pounds and believing it will end well. I can't forget that I once had an eating disorder. This doesn't mean that I will be haunted by my disorder and spend every waking moment fighting my way through the ED bullshit.

So I don't think of Life Without ED as recovery or remission, really. I think about it as verb tenses. The illness: past tense. My life: present tense.

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Flannery said...

Great post!

Cathy (UK) said...

This is a really important topic and as well as having left a couple of comments on Laura’s post, I also chatted with her about this via Skype.

I had low weight, restricting anorexia nervosa (AN) for nearly 30 yrs and was previously ‘written off’ by some doctors as ‘chronic’. My AN was something of a relapsing course, in that I had periods of partial remission where I was coping better with life – and so I was able to relax the rituals/behaviours of my AN. I’d gain a bit of weight, but I always relapsed back to a lower weight. The triggers for the relapses were never about body image/'feeling fat', but rather, I felt overwhelmed with life.

After reaching a near life or death situation 5-6 yrs ago I was motivated to try to gain 40 pounds – because I didn’t want to die. Now that my weight is in the 'normal' range, I manage my AN much better and have few of the symptoms of AN. I am ‘in remission’, but I would not say I’m ‘recovered’ because my AN was so intertwined with both an ASD and OCD, both of which persist and are characterised by routines and rituals (some enjoyable, some borne out of anxiety), food phobias and food sensitivities.

My eating problems, (which include fear of choking while eating and real aversions to certain foods - i.e. fear that they will induuce vomiting) now have nothing to do with controlling my weight and/or trying to keep a low energy intake. When life gets difficult I have to fight to stop myself from restricting, because restricting makes me feel less anxious and temporarily ‘better’. However, the drawback is that restricting triggers my AN. Therefore, I have to try to adhere rigidly to a meal plan to ensure that I eat enough.

I do believe that some people totally recover from AN, and never look back. They are able to lead ‘normal’ lives. Others have to learn to live with co-morbid issues (e.g. ASD, anxiety disorder, personality disorder, bipolar disorder etc.) and to manage their AN, remaining vigilant that it might re-surface. Others never manage to ‘get better’ and die, or become severely disabled.

As I commented on Laura’s blog, it’s important for clinicians, parents and the apparently ‘incurable’ patients themselves to understand WHY recovery seems to be impossible. And, like Laura, I don’t believe that anyone should ever give up on ‘chronic’ patients. I have friends in ther 30s and 40s who have chosen to be treated only palliatively. They have never found treatment helpful and are absolutely terrified of being re-fed. They are fully aware of the risks of imminent death. I simply don’t know how to motivate them to get any better... I wish I could help them...

Cathy (UK) said...

...And I should add - that palliative care is largely inefficacious for low weight anorexia nervosa (AN). This is because almost all physical complications such as heart failure, osteoporosis, immune suppression, kidney and liver dysfunction (etc.) are caused by malnutrition and low weight.

To be offered palliative care for the physical symptoms of low weight AN can offer false hope. Many/most of the physical symptoms of AN reverse with weight gain and continued good nutrition.

Abby said...

Great post and I think I just found my new goal--"to put your (my) eating disorder in the past tense, but always keep your (my)recovery in the present tense."

EDs are different than something like cancer in that there is no point A to point B that can be verified through a blood test or medical proof, so to speak. While you can reach a certain weight, there is no point when a doctor will come back with test results and say that your ED is completely gone from your system, there are no traces of infected cells and you are officially in remission.

Much like an addiction, we will always have to be conscious of the triggers and symptoms, diligent in our efforts to stop the bleeding before it starts again. An alcoholic can't have just one drink, just as I can't start skipping meals or reading blogs on maladaptive behavior and obsessive exercise. It's something that I think I'll have to live with forever--not necessarily the disease, but the knowledge that it's something I have to stay on top of every single day.

This is going to sound bad, but I often doubt that those who "completely" recover and have no more anxiety, hang-ups or behaviors were ever really that sick. (I can't believe I just wrote that, as I'm sure I will be hated.) Being as entrenched as I am at times, I find it impossible to think I will never revert back in some way, shape or form to that way of thinking. Not that I'll act on it, but that it won't even be an issue.

Damn verbs...

Jane Cawley said...

Hot topic these days! NEDA's offering a free webinar later this month "What does Real Recovery Look Like"

Carrie Arnold said...

Thanks for the reminder, Jane. I've signed up for the webinar and just have to hope I'm not working. I'm guessing they'll make it available afterwards online...

James Clayton said...

Great post and really thought-provoking stuff.

Recovery is about so much more than appearance but I'll just briefly say that, if we're debating what recovery 'looks like', in terms of appearance, it might just be best to leave it at a smile.

Fiona Place said...

Great post - I would definitely agree recovery is not just possible but do-able. That someone can not only recover - but they can also become so distanced from the person who was once obsessed with food they can truly move on and 'forget' it was once them sitting at the table not eating.

This certainly is the case for the narrator Lucy in the novel Cardboard: A woman left for dead.

Angela E. Gambrel Lackey said...
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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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